The Things I Miss

The Things I Miss
March 11—15, 2003

(And a tribute to Gertrude Stein:
"What a Joy It Is to See and Hear the Names
of All of the States of The United States of America")

Tuesday morning, 7 O’clock, March 11
(and finished Saturday morning, March 15th)

I’ve listened to what I said on this tape and then I started thinking after I woke up about the things I miss.

I’ve been doing some visualization exercises that were advised for
        me to do, just something very simple and concrete.
So, I visualize my fingers moving, my hands and arms getting stronger.

Sometimes I visualize myself walking with a walker.
With my fingers and hands I’ve been visualizing and imagining
        that the fingers can move independently which they cannot
        do right now on either hand.

So I visualize myself playing the piano -because I can remember very
        much the feel of playing the piano. Sometimes I visualize
        playing the cello especially with my right hand. It takes such
        dexterity and sensitivity with the sensory nerves to hold the
        bow, and that’s exactly what I don’t have right now in my
        right hand.

So in order to visualize holding the cello bow it takes a lot of…
        -it uses the muscles and sensory nerves in a way I
        haven’t used in months and months, -in a couple
        of years really.

So that made me think of what I miss because
I miss playing the cello.
I miss playing the piano.
I miss going for walks.

The other night when Ginny and I talked, Ginny said she’d like
to hear me talk about the things I really enjoyed doing.

And as soon as she said that I saw us walking together and tears
came to my eyes because I miss that so much.
And I enjoyed walking with Ginny anywhere.

We went for walks everywhere together.
On the beaches, in the places we lived on Cape Cod and in
        Boston. Whenever we traveled we liked to hike or walk.
We hiked in the Blue Hills, we hiked in New Mexico, New
        Hampshire, New York City, Maine, Vermont, Quebec,
        Assisi, Rome and always around Jamaica Pond.

So it’s a good thing that we did some traveling together.
One of our first trips together out of New England was to
        San Francisco in ‘95 to see Nava, my friend, and to
        show Ginny where I’d lived and the beautiful city of
        San Francisco. And Napa Valley.
That was really nice, it was wonderful.

And Nava (now on the other side of life), when I think
of her now she gives me strength because
of the courage and strength she had in her illness.

I miss sitting on the beach on a warm spring day with a breeze,
        watching the waves come in, thinking about what’s on the
        other side of the ocean.
When I first went to Nantucket many years ago to visit my friend
        Caitlin, she used to always say,
"If you look straight out there, the next land is Spain",
And that was interesting to think about.

        I was telling Danny the other day about my travels –he
        asked me to tell him about my travels, he wanted to hear
        about how I had gone to all the states in the United States
        except for Florida -not including Hawaii and Alaska.

So I was telling him about my traveling with my mother when
        I was a kid. We camped all over the Midwest –camping is something
        everyone in the Midwest seems to do, but few
        in New England do it.
And we took a trip to California, camping through the lakes and
        ponds of Minnesota, over the Mississippi River, through the
        Black Hills of the Dakotas, the Rocky Mountains, the Grand
        Canyon, and into the deserts of Arizona and California,
        camping in all the state and national parks that we could.
        That was in 1968, and mom fed all the hippies at
        our campsites.

The year before that we went to Philadelphia and Delaware, we
        crossed the Delaware at the same spot Washington and
        his troops did.
And another year we went to New Jersey and Washington, DC,
        New York City (WE DID NOT DO MUCH CAMPING THERE!).

Then with the boys choir I was in for a couple of years -the YMCA
        Boy’s Choir which was a big boy’s choir, when I was 10, 11,
        and 12.
We went to Kentucky and Nashville, Tennessee and sang at the
        Grand Old Opry and we traveled through Indiana, Illinois, Ohio, and on to
        Washington, DC again. This time we sang at the White House.

And when I moved to San Francisco to go to the Conservatory of
        Music, I traveled by car several times across all the Middle
        Western states and Western states from Wisconsin to California,
        and California back to Wisconsin, and one year to Boston and
        Cape Cod one summer – so I pretty much traveled through all
        the states in the middle.

And when I was finished with college –and I moved to Boston- I drove
        from San Francisco to San Diego one last time and took the
        southern route. So that’s when I went to as many states as I
        could in the south. I almost got a speeding ticket in Texas and I
        couldn't wait to get out of that state and I found the south way
        too exotic and very depressing for me.

Though the one spot that I did like a lot was when I stayed in New
        Orleans for a few days...I wanted to move there (laughing).
        I thought it would be a lot more fun than Boston -and I was
        right (more laughing).

                    -I cried the whole first weekend I was in Boston, in the
        North End -in January, in the cold and bleak, small minded
        neighborhood –nothing like the great artist’s hang-outs I knew in
        North Beach or the Haight in San Francisco! –I thought, "Oh my
        God what have I done? I have just ruined my life!"

                    ---Well life does have a way of taking you through some
        surprises and then again more surprises, just when you think
        you might have something all figured out!...

So, I was telling Danny about ALL MY TRIPS -and that was fun!
And by the time I moved to Boston –in 1984- I had been to 47 of the
        50 States in the United States. And I thought for sure I’d get to
        Florida some day (laughing). And then this year Gin and I
        thought we’d go for a trip in this cold winter to Florida. But it
        has been too overwhelming to think about traveling in a plane
        with me in the wheelchair and everything else that we’d
        have to take. And my condition keeps changing so fast it seems
        that my traveling days are over. (At least until my upcoming
        miraculous recovery! –HA HA!)

So our next trip together will probably be to go down to Little
Compton, RI or to Westport, MA again –which is a beautiful place.
And no one can complain about spending a week or two there!

The Things I Miss…

The Things I Miss…Seeing and talking to people at will.
Taking a shower by myself and without help
        and getting dressed quickly when I’m in a rush.
        (There is no such thing now! It usually takes close
        to two hours!)

Painting.

Writing in my journals –handwriting letters instead of e-mailing,
I would still do it if I could. The only reason I stopped is
because of my hand.
I would prefer that to sending of e-mail.

I play chess again (thanks to my friend John’s visit –from New Mexico)

–That’s something I can do on computer and through e-mail.
I appreciate that. In the last few weeks I’ve played about 150 games!
(And I’ve won a few more than I lost!)

The Things I Miss…
Reading poetry (though I can’t really say that I don’t do it anymore
        –I do, but mostly my own). It is harder to do everything - even
        to read! -- to hold books and… I have so many books on my
        shelves, I see them every day as I get pushed around in my
        shower chair, as I get dressed -- I pick one at a time sometime
        or I have someone hand me one, because I have not the
        strength to lift it off the book-case, and then they're bookcases
        that I cannot get to, and there are books packed away -- which I
        may never see again. And I miss all these books. I loved
        reading.

I would love to sit under a big tree (maybe next month when we can
        start thinking about Spring again and daffodils and other flowers
        and the greenest green of the new leaves…) -sit under the tree
        with my legs spread out in the sun, maybe with Gin –or maybe
        alone –in the Arboretum and read a beautiful book of poetry
        -William Blake, Shakespeare, Dickenson, or Walt Whitman.
And I would get up and run to another tree and hug it and chase a dog
        for the hell of it and race some of the toddlers -I would
        race them by crawling or skipping or galloping! And then I
        would return to my tree and feel the wind in my face and hair
        and watch it blow through the grass and watch the old man on
        the bench down the way try to keep his newspaper from blowing
        away –and if it did I could chase it down for him and give it to
        him, since he could not get it himself…that little act of kindness
        would feel so great to do just

–BECAUSE I COULD DO IT MYSELF, FOR SOMEONE ELSE…

The Things I Miss…
Or the things I wish I could do…
To do more for others...
To return the favors and the kindness and generosity of others…
To cook a meal all by myself or make a feast for Ginny and while
        doing so turn on some opera at full volume...
To pick wild flowers in the field, to fly a kite with a six-year-old,
        to run up -as fast as I can- up a hill, tucker myself out and
        run down again…
To ride bikes along the seashore in the wind letting my hair blow
        wildly, and watch Gin sail past me…

Playing cello, playing cello, playing cello...
And to easily kiss and make love with my loving wife, Ginny…

The Things I Miss…
It's Saturday morning, March 15th, the Ides of March.

I woke up several times last night with incredible neuropathic pain in my buttocks, my sit bones, and I thought, oh, I thought I was going to cry or scream, it hurt so much and I tried to meditate to get myself

back to sleep. I did get back to sleep but I woke up about three or four times with it, and finally, I guess the last time, somewhere around 2:30, I was able to get back to sleep and continue sleeping through the night. I woke up about 7 o'clock this morning. I'm still in bed but I had Vita, my home health aide, do some range of motion with my legs and then turn me on my side which was a fairly complicated effort. It means putting pillows here and there, turning my legs, bending my knees, pulling on my hip, pushing on my shoulders, making sure there is a pillow for my head, and, after about five or ten minutes of pulling here, putting a pillow there, I am on my side, and I can stay on my side now for, I don't know, maybe about ten or twenty minutes before it starts hurting too much –a half hour if I am lucky. So that's good, it's the first time in weeks that I've been able to lie on my side. I think it will help stretch my back a little bit, put my legs in a new position so that it gets some stretch there as well.

The other day, I was talking about things I miss, and yesterday, last night, I actually transcribed the end of that series of dictation myself, typing with two fingers. I found a way to get my chair in a tilt and then put one of the arm rests on top of the desk so I can get myself closer to the keyboard without falling over the keyboard when I try to type, so I tilted back and was able to type with two fingers, pretty fast, actually. Since I was not falling forward, I could do a lot more.

I transcribed the few sentences that were left to do after Janet had done the bulk of that side of the tape, and then of course I added a more to things that I miss, kind of like the song, "A Few of My Favorite Things".

More on The Things I Miss

Well, this is one of the things that I miss that I cannot do too much, but today I am doing it, which is to lie on my side! and roll around, roll my back, roll my hip, my knees, my legs, my feet - you know, basic movement, swimming, walking, running, climbing stairs easily. The last time I climbed stairs on a regular basis, it was such an effort, so effortful, that I don't miss that. That was when this illness started, and I had to use a cane or crutches.

You know, when I think about walking, I think about using the walker but I can more easily think about the times I walked with Ginny around the pond before I was ill… but when I think about climbing stairs, it is painful to think about it because what I remember most is the illness progressing, day after day, getting harder and harder. Last year about this time in March, I went so slowly with crutches up and down the stairs, up one step at a time, you know, it would take me five minutes.

Thinking about climbing stairs is not fun although one time Ginny and I and John Ellis and Jenny Stirling and their new baby Fishy, her real name - well I think Fishy is her real name, but anyway, her other name is Katherine - we all went to Mt. Auburn Cemetery. Oh yes, and Josh was there, John's son Josh - nice kid, about 13 years old at the time, and that was about a year and half ago or something like that, and we went to Mt. Auburn Cemetery and walked all over the place. I was using a cane, or maybe, yeah, I think I was using a cane, and we went up to the tower in that cemetery which is a nice tall tower with a circular staircase, and when you get to the top, you have a magnificent view of Cambridge, and north of Boston area, -trees everywhere, very beautiful - it makes the Boston area look so beautiful. That was really nice, that was a real nice climbing-the-stairs day. I think it was Spring; I could be wrong, maybe it was the Fall. It was kind of brisk, the kind of weather where you need a jacket because it's windy, but the sun was out - I can't remember whether it was Spring or Fall. It seems to me we were kind of waiting for the leaves to turn color...

I talked about missing playing the cello and piano. It's been so long since I've played the cello, really played it, about two years ago, maybe even three years ago, yeah, three years ago or even four years ago. All that time, for about two years, I would play intermittently, and it would just be so difficult because of my right hand not being able to really feel the bow in my hand for about two or three years. At one time I tried to play for an hour or two every day, trying to build up the strength. I thought that if I did that maybe the strength and the flexibility and the sensation would come back to my hand but it didn't. I didn't know what to do about that so, after about two years of struggling with trying to play the cello, I kind of gave up and only played at lessons where I taught, and then gradually I gave that up as well and just demonstrated very, very rarely -but during that time for two years I played recorder more.

I always played recorder for my students in 2nd, 3rd and 4th grades where I taught recorder or singing. But we had a faculty quartet for two years with Bill Lindeman, Jennifer Smith and Clare Hemmenway and me, and we played music every Friday afternoon for about two years. That is something I really miss. I miss making music together. I miss working on something with my colleagues. We played Baroque and Renaissance music and really got into listening to the different harmonies - it was so different back in the Renaissance - and also the melody and the structure of the lines… and we tried to play a couple of Bach fugues and were successful in learning one pretty well. It was really fun. I miss that. I also miss singing in Resounding Joy choir – I did that for one year and then a little bit this year - sang for our Benefit Concert.

The recorder quartet and the singing were among the greatest experiences of sharing music that I have had. Good company and making great music together.

A few years before that, before I was a teacher, when I was trying to find my way -find who I am and what to do with my life, while I was a nursing assistant at the Hospice of Mission Hill, I played about once a month in a string quartet, and that was a lot of fun. The only thing was that we didn't meet often enough so the energy of the group kind of dispersed. I was the only non-doctor in the group. The two violinists were psychiatrists and the violist was an internist - she worked at the Hospice, that's how I knew her. I liked to call it The Doctor Quartet and pretended for a while that I was one too! –I even considered for a while becoming a psychiatrist or psychologist. HA! I did an interview, an informal career interview with Adam, one of the violinists. He told me about the long hours and how difficult it was to balance his time between work and family. (And then later I decided to be a Waldorf teacher -- and I found out just what he meant about long working hours and not being able to balance family and work! -- Ha, Ha!) There is great music in quartet literature, and not easy.

I miss conducting the orchestra. The last couple of years, I felt that I was just getting to the place where I really knew what I was doing, really having fun with it. I didn't even get to the place of researching or learning a lot of new music, new scores, for the orchestra because it was only really in this year that the orchestra was of the quality - good enough, basically, and large enough - that we could play real orchestral music, so I never really had a chance to conduct and lead an orchestra in symphonic literature. I would have liked to have done that more.

I am pretty much not missing working in the Waldorf School in terms of the kind of effort it takes to work with one's colleagues. I think Waldorf School education is the best education that you could possibly have for the children but the teachers work way too hard and the system does not take care of teachers so the teachers burn out, burn each other out, and I guess it's similar to a lot of healthcare and nonprofit organizations where people give and give and give to others but don't know how to give to themselves. They do not know how to take care of themselves. They do not know how to support one another and themselves, and it's such a sad thing. The teachers in a Waldorf School give so much to the students and the parents and sometimes to each other but rarely, I have to say, rarely, rarely, do I see a teacher give him or herself the kind of love and compassion and effort , working effort, for oneself that he or she gives the to the students. I think it is important to show the students also that you care about yourself. It is such an important lesson in life. I know it is one that I am learning. I had two huge chances to learn more about that. One was at the Cape Cod Waldorf School and now, of course, with my illness, I have learned -or I'm learning I should say - I don't know if I've really learned it - but I am learning how important it is to take care of oneself. And what does that mean to take care of oneself? It means getting the proper rest, physically; emotionally taking care of oneself, the thoughts we think about ourselves, and to make time to do the things that we really enjoy, that make us a better person, whether it is helping others, whether it is being creative and painting or singing or playing cello or going for walks or building a house - that one's not for me - but, whatever it is that really makes you feel good, not just fun but makes you feel good, like "that's right, that's me, that's what I deserve and that's how I can help the world". It's a combination of the two. I don't mean for people to be egocentric and not think about others because sometimes the best thing you can do for yourself is to help others, and certainly something that I miss is being able to help others –especially with so many people helping me...

So all of that was recorded on my side so I was able to spend - what was that? - maybe about 30 minutes, maybe a little more, on my side.

That's really good. It's the first time, as I said, in weeks that I was able to be on my side, and then afterwards I asked Vita to do a little bit more range of motion, moving my body, stretching my legs a little bit, then once I got up using the Hoyer life with Vita and Ginny's help, Ginny gave me a little range of motion with my left arm which is very weak now, I cannot really lift my arm at all. Part of the process of losing one's muscles so gradually like this is, I don't know, I often have the feelings that I look spastic or I look really weird, my body looks so different, not so much in a still position but any time I try to move anything, of course, it looks so different because I just do not do anything elegantly or naturally or easily, it is awkward. It's awkward, everything is awkward. -interrupted…to be continued sometime…

top